A GIFT FROM GOD
WORDS Rachel Hewitt
At only 17, Fiachra McAdam is a state wheelchair soccer champion, holds a top ten-pin bowling score of 187, loves music and has a winning smile.
Fiachra does all this despite being born with cerebral palsy and spastic quadriplegia, suffering from epilepsy and asthma and being legally blind.
Fiachra is also the unifying force for many different people in his life, from his family members to his carers, teachers and therapists. He attends Year 10 at Mount Waverley High School, and lives with his mother Gina, his dad Brian and two sisters Clare, 13, and Ciara, 12. The family is very close, the strong relationship between Fiachra and his younger sisters evident in their joyful play.
‘We’re really, really lucky’, Gina says. ‘They’re three lovely people and they’re very close and care for each other.’
After a healthy childhood, Fiachra required extensive emergency surgery in his teen years, with around 30 hospital admissions for seizures. He was critically ill in March 2004, a time Gina says was very hard for Clare and Ciara.
‘We took him in to the hospital one night because we didn’t think he was going to last the night, so they’ve had that experience. He’s been ill quite a few times and Ciara who’s younger said "Well, he always gets better. He’ll get better".’
Gina is proud of the way her daughters have coped with their brother’s big experiences.
‘Their lives are different to other girls of that age’, she says. ‘They’ve been involved in a lot of things that happened because of Fiachra. I think, as well as being a bit of a problem, it’s also very good. They’re very caring and compassionate. They’ve already developed a whole different side that people usually take longer to find.’
Despite Fiachra’s health issues, Gina says he achieves tremendously, wants to learn and is always ready for what’s happening next. ‘I think–even though he’s my boy–he’s quite a remarkable young man for continuing on, even though he is often in quite a bit of pain. I think that’s impressive because I don’t know that I would’, she says.
Fiachra has an ability to bring pleasure to many people and to motivate them to do their best for him.
‘You just want to do more’, says Margaret Taylor, one of Fiachra’s two carers at Mount Waverley High School. Margaret, who takes the afternoon sessions of Fiachra’s school program, describes Fiachra as very understanding when there are sometimes problems understanding him. When he gets frustrated at things he can’t do they try and find another way around it.
She also shares and enjoys Fiachra’s ‘wonderful, wicked’ sense of humour (‘We’re a bit naughty’, she says) and finds him very easy to be with.
‘That’s a credit to his parents to give him the strength to do that. And his sisters who have ridden all the way with him. They’re just an extraordinary family.’
Margaret’s experience working with Fiachra has had a great impact on the rest of her life and he has taught her many things.
‘He’s taught me patience. He’s taught me compassion. He’s brought out my sense of humour. He’s taught me that it’s okay to be me and be natural and who I am’, she says.
Margaret finds Fiachra so inspiring that when she won a centenary medal for her work in the community last year she took him along to the ceremony because she felt he was partly responsible for her presence there.
‘Just seeing how keen and focused he is, he’s inspired me to go even further into the community work. Kids in better situations would walk away but he just keeps going’, she says. ‘He’s like a little gift from God. He has an impact on everyone who comes into contact with him.’
Judy Glasson, Fiachra’s other carer, has been with him since prep. Like Margaret, Judy says it makes an impression to see the love and devotion that Fiachra’s parents and sisters express. She says it prompts her to reflect on her own relationships and the value placed on each individual person.
‘There’s the respect and dignity that each one is owed and I just find the family’s example of love so impressive. It’s a privilege to be part of the caring for this special child’, she says.
Margaret and Judy are two key links in a chain of people who support Fiachra and his family. Time spent with music therapists has been beneficial. Fiachra loves music, particularly Van Morrison, U2 and Pete Murray–so much so that his wish was granted when Pete personally visited the McAdams’ house last year when Fiachra was critically ill (pictured).
Judy says the three music therapists Fiachra has worked with have all brought something different for him. One music therapist helped Fiachra to write his own song, which was later performed for an audience in the McAdam’s loungeroom. Another sang a Van Morrison song that he loves. Judy says in the time after his illness when Fiachra’s responses had become more muted, his response to the song was one of pure joy. ‘It was such a significant moment, his response was so strong. It was just wonderful. Gina and I were both crying.’
The aim for this year is to see Fiachra back in the classroom more, which will depend on his health.
‘Even though he is now legally blind, he can still hear very well and doesn’t miss much. He’s interested in listening to what’s going on’, she says.
Fiachra has taught Judy that it can take a long time to get to know people, especially a child with the disabilities he has. She says, though it’s easy to make a judgement quickly and categorise people, ‘In doing that you can miss out on the beauty of a personality. There’s a lot hidden there that with time you can learn to appreciate, to know and I guess to love too.’
Gina believes the fact that Fiachra is loved and is loving is what’s really important in a life that can be ‘so fast and furious’. She believes it is when you risk losing someone that you really identify your priorities.
‘And it’s not the flat screen or the things that everybody wants so much. To love and be loved is what Fiachra has shown is so important in life, and how–I don’t mean this to sound corny–but how much we have gained from walking this path with Fiachra. It’s been quite a privilege to have been able to support him and learn so much.’
Reproduction of material from any Jesuit Publications pages
without written prior permission is strictly prohibited.
Copyright 2002 Jesuit Publications
PO Box 553 Richmond VIC 3121 Australia
Tel +61 3 9427 7311, Fax +61 3 9428 4450